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Queensland, September 2012

On the 24th September 2012, I presented to the Logan Hospital with the possibility of my waters breaking. I was 35 weeks. I was assessed, had internals done and a fetal heart rate check. Matthew’s heart rate was decreasing but the midwives weren’t concerned. They did some tests and it turned out that my waters were leaking. They gave me antibiotics and sent me home. I received a phone call Tuesday morning at 7:15am from the head obstetrician. He told me that he had looked at the results from the night before and that he wasn’t happy and was very sorry I was sent home. He had asked me to come in ASAP. I got my stepdad to drive me to my mum and got my daughter looked after by her Uncle Liam. I presented to the MAC ward, were I was asked to go for an emergency ultrasound. While I was having that done, I was reading the measurements and they didn’t add up. He was only measuring 29 weeks, and there was restricted blood flow through the cord. I was wheel chaired back to the MAC ward, were I was given the news that Matthew needed to be delivered ASAP. I was told that he was very small and could be lucky to be 6lbs when he was born. I wasn’t ready; I didn’t have my bags packed. I had my 17 year old brother pack bags for me and for Matthew also. I tried to convince the midwives that they were wrong, but they assured me they were not wrong.

I was admitted that night and was supposed to be induced, but due to lack of staff and to many inductions being conducted, I was told it would happen on the Wednesday. They kept an eye on me during the days and made sure bubby was still doing okay. I got induced by the gel. That was hell! Nothing happened, I just got a few period-like pains. At 7am Thursday morning, I was taken to the birth suite to have my waters broken. This was unsuccessful, and Matthew’s heart rate had dropped to 42. I was prepped and rushed for an emergency C-section. I felt ripped off, this was not in my birth plan, but I knew it NEEDED to be done, for the safety of my baby boy. They started operating, and it wasn’t long before he was born. He wasn’t breathing. I didn’t get to see him. I was unsure whether he was definitely a little boy. I looked at my mum, and broke down in tears. My boy wasn’t breathing. He was placed on oxygen immediately and rushed off to special care. I didn’t get to see him, cuddle him or even give him a kiss and tell him that I loved him so much already. I was taken to recovery, were my midwife came to tell me I had a baby boy, that he was now breathing but not on his own. That was heartbreaking. She told me that his sugar levels were low, 1.1. She started expressing some colostrum from my breasts. She told me that my mum was up there with him. He was going to be named Riley, but the midwife and my mum had said that he didn’t look like a Riley. So he was nameless until I could see him, and until I decided on a name that I liked.

I was taken back to the Maternity ward where I was told to rest. It took me 2 days for me to convince a nurse that I was able to go and see my son. It wasn’t until I saw him that I truly knew how lucky I was. I had 2 kids, both perfect. I wasn’t able to hold him, and breastfeeding was near impossible. For the first 5 days I was syringing my milk, until I could use the breast pump. I had the doctor come by and talk to me about Matthew. He had told me he was diagnosed with IUGR – Inutero Growth Restriction. Matthew was on oxygen for 12 days. I wasn’t able to hold him for the 12 days, because of the oxygen and because he couldn’t maintain his own body temperature. He was still low in sugar.

Fast forward a few weeks, and the Paediatrician, Dr Mills, had told me they were wanting to run some chromosomal tests, because still at 4 weeks old he wasn’t sucking, he was still tube fed. I knew something was wrong. He had a cry that I hadn’t heard before, and he was always sleeping. We were sent home on his due date 5 weeks later. We were home for 3 days before he was admitted back to hospital with breathing issues. We were there for 5 days. He was put on oxygen and told there was nothing wrong, but me as his mum, knew they were wrong, I didn’t listen, I needed to be the voice for my son. He needed me to stand up and say there’s something not right. They listened and ran some tests. He had RSV and Bronchiolitis. He was on antibiotics. Finally we were sent home, and I got a call 2 days later from Dr Mills, saying that Matthew’s blood tests were back and he needed us there ASAP. My heart sank. I knew this couldn’t be good. What was wrong with my perfect baby? We arrived at the hospital, where we were placed in a room and told of his news. “I’m sorry Miss Robinson, but Matthew has Cri Du Chat syndrome”.

I had NEVER heard of this before, and didn’t think much of it until I googled it. My heart skipped a beat. How was this happening to us, MY boy, MY family? I thought my life was over. I didn’t want to believe it. No one could give us any information. I had all these questions that I needed answered but no one could. After many sleepless nights feeling sorry for myself and thinking why us, I did some of my own research. I had managed to get a hold of a lovely lady, Hannah, who has a 2 year old daughter, Claire. Claire has the same condition as Matthew. I now didn’t feel so alone. She came to see us a few nights later. We spent 4 weeks there in hospital. He was not feeding, not gaining weight and had low Hbs. Finally, again we got sent home, being taught how to do the feeds, and it all hit home. I got home and we began to live life as much as possible as a normal family.

On 13th December 2012, Matthew was rushed to Mater Children’s Hospital. He had a seizure. The ambos come out and gave a rescue medication. He came out of it, but continued to have 4 more. We arrived at the hospital and he was rushed through and checked out ASAP. We were admitted. That night while the nurse was doing his hourly obs, he had a seizure, and stopped breathing. I was asked to leave the room. Why was this happening to us? The nurses gave rescue medication (Medaz) and resuscitated him. That seizure lasted 8 minutes. Then another came and this time it lasted 14 minutes. The PICU doctors were called and asked to assess him. His body was shutting down; he was on 3 litres of oxygen and had holes drilled into his shin to get bloods down through the bone marrow because they couldn’t canulate anywhere. He was rushed down to PICU. I called my mum in tears. I wanted my mum there, but she was 2.5 hours away. My grandma came instead. I wasn’t allowed down there because they weren’t sure of the outcome. I finally got told I was allowed down there, but only in the waiting room. I had the nurse come into me and check how I was going. I was shattered. I asked her if he was going to make it. I will NEVER forget her words: “Jasmyn, I’m sorry to tell you this, but Matthew may not survive the next few hours, please have your immediate family here to say your good byes”.

I cried, I screamed, I cried some more. It’s not supposed to be this way. I just had him and now he’s being taken from me. I went in to see him. I gave him a kiss, and held his little hand, told him I loved him and that it’s in God’s hands now, and left. I couldn’t be there; I couldn’t see him in that state. He was lifeless. He had been intubated and was on life support. I went back to his room, had a shower and cuddled his blanket. It smelt just like him, vomit and all. I somehow fell asleep. I didn’t want to. I was asleep for 3 hours when I was woken up by a nurse saying PICU needs you. My heart broke; I thought the worst, that he had passed. I cried the whole way down. I got into the room and the nurse met me at the door, gave me a hug, where I broke down more. She told me, “Matthew has woken up. You can come and see him if you like.” The smile couldn’t be taken off my face. I still wasn’t able to hold him though. Mum had gotten there and saw him and cried, which made me cry more.

He stayed there; I went and visited him all the time, as I wasn’t able to stay there with him. While he was in there, I was told he had 2 viruses, a chest infection and pneumonia. He was still on oxygen. He was well enough 5 days later to be taken back up to his room. They watched him, and he became the little 8 south flirt with all the nurses. Whenever he would cry, they picked him up. He loved it. The doctor did some blood tests 2 days later, and I was told he needed a blood transfusion and an iron transfusion. That was fine, he took the new blood well. By this stage he was only weighing 4.1kgs. Our first Christmas with Matthew was spent in hospital. It was hard. I didn’t get to see my daughter open her presents. Luckily my mum bought up a few for both the kids, so I spent a few hours in hospital with both my kids and mum for Christmas. It wasn’t what I wanted, but it was the best I could do. We were discharged on the 5th January. We got home; it was great. I loved doing things on my own without having nurses around. On the 17th January, Matthew had a check up appointment with Dr Mills. He was concerned about his breathing, so he admitted us to Logan Hospital. We were there for 3 days. Matthew was placed on oxygen and observed. We were sent home 3 days later. Today, it has been 5 weeks since we have seen a hospital. He is doing so well, he weighs 5kgs, still very little for his age, but I don’t really mind. He is still my baby.